How does one find a Lyme-Literate doctor? Do they advertise or are they found on an online community of sufferers of the disease who recommend the doctor? Like a Boneyard for those who had or have, Lyme Disease?
Terrible that a person would have to suffer for years and not find the correct treatment initially when the symptoms first manifested themselves.
I believe you just Google it but there is probably an official title for such doctors. Try
www.lymeconnection.org. Because CT is the origin of Lyme Disease there are far more doctors in this area than in other parts of the country, which makes sense as there are far more cases of the disease around here.
I know Dr. Steven Philips of Wilton is one of the top guys out there. Yale-trained, apparently an absurdly intelligent man. A friend told me the waitlist for an introductory appointment is usually six months. If you look him up online you'll see countless rave reviews, patients stated he saved their life or gave them their old life back.
Interviews with doctors, therapists, and other Lyme disease experts.
lymeconnection.org
A key thing with these doctors, and even the CDC describes Lyme Disease this way, is that they make clinical diagnoses because it's so difficult to get a positive blood test in long-suffering patients. Of course, the downside of not having a positive test is that you're spending thousands of dollars out of pocket and taking antibiotics for a long time and wreaking havoc on your insides when it's possible you don't have the disease. These doctors are for people who've come to that point and believe it's worth it to take the risk. Their quality of life is that poor.
This is why Lyme Disease is so controversial. Normal doctors say "I can't treat you for something I can't prove you have," while only relying on blood tests (which only test for antibodies, not for the bacteria). Lyme-literate doctors say "we stand by what the CDC says regarding a clinical diagnosis, plus there are thousands upon thousands of people suffering who can't find any answers. We're going to treat them for Lyme Disease since their symptoms align with those of the disease once we've ruled out other potential causes." Normal doctors think Lyme-literate doctors are irresponsible for prescribing antibiotics haphazardly and that some are frauds taking advantage of suffering people. The big problem is that the core symptoms of Lyme--outside of the rash (which most people don't get) and Bell's Palsy--are similar to a dozen other diseases and ailments which manifest themselves similarly: brain fog, fatigue, poor memory, aches and pains all over, etc.
There are some interesting stories about doctors dealing with crazy patients who yelled and demanded to be treated for Lyme Disease when the tests repeatedly came back negative. I guess some celebrities have talked up Lyme Disease in the last decade and now a ton of people who aren't bursting with energy every single day believe they have Lyme, which of course makes things more challenging for those who are indeed suffering from the disease.